Neurology

Today Little Man saw neurology. It was a fairly productive appointment, though we're still looking for the big answer. The best news is that there were no vascular abnormalities found in his brain the other night. Very good news for an 11 year old indeed! :D One of the things I didn't realize we had to worry about, but now we know.

A few interesting Little Man-isms were added to the list today, though we're not sure what the significance of them yet is. His eyes are always dilated, he's weaker on the left side, and his tremors are no longer just hand tremors but involve his entire arms and sometimes his whole upper body.

There is a lot of concern about his staring spells and also his slurred speech/clumsiness/spacey episodes. These could be more seizures or could have to do with something else, possibly blood pressure? His bruising and vascular system earned him a referral to hematology to further explore what's happening there. He also needs to have regular follow up with neurology in Connecticut - none of this occasional appointment then nothing that he's had a couple times.

Genetics also needs to be involved to see if we can find the root cause of all his issues, and to further explore the connective tissue disorder. Instead of being a cute party trick as we've previously thought, this could actually be serious.

And...just to keep us busy...he needs to restart physical, occupational and speech therapy. I think we've got enough on our plates to keep us busy for a while. They want a lot more extensive testing done in the neuro/hemo/genetics departments. Guess we'll get our crash course at CCMC. They did say that CCMC is a great hospital for neurology though which makes me happy since they'll be so close.

Overall, pretty much more of the same for now. Be cautious, be extremely careful about him becoming dehydrated and be careful in things like baths or activities because we're not sure when he may have a seizure/become unconscious. Really though, he's the same kid he's always been, we just know what to watch for a little more now.